He also finds music immensely soothing. We sung him to sleep for years, we still play him pre-bedtime tunes on the pennywhistle. And we still use music to help him calm down and communicate when he's agitated, or help him get those stubborn, elusive words out (like many people with autism, his word retrieval skills short-circuit when he's upset).

For the last few months, Leo's been favoring a sung arpeggio. Sometimes we just use it to sing his name; other times, we'll sing the first part of a sentence, and he'll complete both the arpeggio and the statement -- often with those words that wouldn't perform for him in a non-musical setting. It almost always helps, or makes him feel a smidge better. It's the musical equivalent of a lovey or blankie.

And that is why he did the strongest double-take I've ever seen him give when I sat him down with Singing Fingers for the first time, and had him play with the painting above -- into which I'd recorded his eponymous arpeggio. I didn't capture that moment -- it happened so fast, and with so much more intensity than I'd anticipated -- but you can still see him going through and playing with the sequence in the video below.

Singing Fingers is one more example of creative app developers enabling kids to explore their strengths -- music in this case -- in ways I'd never imagined possible, without imposing a literacy or language barrier. The app also encourages Leo (a sub-vocalizer like his mom) to project while talking and singing, because it requires a certain decibel level for the "paint" to take.

7.25.2011

Special needs penalty costs really bother me. Why should families pay $75 for a special sit-upon therapy ball when we can get the same damn type of ball (or sometimes, a better one) from Target's yoga or Pilates section for $29?

And now, I'm seeing this same penalty with special needs apps for iPads and other devices. Why are we so often asked to pay more for "special needs" apps than those with similar functionality, just because those apps are developed for special education or special needs -- especially when some don't have the top-notch interface or design to merit the extra costs? So I had plenty to say when a Mercury News reporter called me up last week as a source for the article Using touch screens and apps to treat autism. Here's one of my quotes:

"Right now it's kind of a Wild West in terms of app development," [Rosa] explained. "A lot of people who have experience with kids with special needs are putting out apps. They have great ideas and great content, but unfortunately they sometimes have clunky designs and clunky interfaces."

And that's true, but that's not the full story. Here's the comment I left, to clarify:

The special need professionals who develop apps have a wealth of talent and experience that traditional developers should tap, because they can repackage most apps for kids with special needs as early learning apps for typical kids. Then these apps could have top-notch UIs and design, and wouldn't need to have the special needs penalty costs attached to special needs apps due to developers anticipating a limited market share.

It's absolutely true. I'd love so see more developers enlist the speech therapists, occupational therapists, behaviorists, special ed teachers, and parents who are making such fantastic (if sometimes rough-around-the-edges) apps, and bring them into the fold. In an app development environment that expects developers to produce new apps every six weeks, why not do what software producers have been doing for industry aeons -- take the special needs apps' chassis and content, rework them as "early learning" or "toddler" or whatever typical developmental age range is suitable, and release them for that market as well? You'll make more money! Then you can reduce the cost of the special needs apps, ideally.

Some of this collaboration is happening already. Dawn Ferrer and Luna DeCurtis, the SLPs (speech therapists) and innovators behind the language-encouraging app That's Silly attended the May 2011 Dust or Magic children's app development camp in Monterey, and found themselves surrounded by other developers who were fascinated not only by the two women's professional knowledge, by also by how they and the children in their practice use apps to learn and play. I hope those developers were able to incorporate that what they learned from Luna & Dawn into their next wave of apps.

And not all special needs professionals-turned-developers need hand-holding. Dawn & Luna's app That's Silly ($.99) is an exemplary boundary-defying early learning app. Kids can play with it by themselves, choosing nonsensical scenes of various complexity levels to compare with the more typical version of the same scene (e.g., in the screenshot on the left, you can swap out the girl's sandwich for a bike). Parents can play with their kids, eliciting language. And the buttons at the top of the screen allow both parents and professionals to track kids' responses, if desired. It's simple, flexible, beautifully illustrated, and fun. I hope other app developers are taking notes.

Speech with Milo is focused on developing language skills in children. Created by the licensed Speech-Language Pathologist that brought you five other language apps, to build storytelling and narrative skills. The interactive story book allows children to build skills by telling the story on their own. You have the option of reading and listening to the words that we provide, or you may create your own story. You can turn off the narration and words to create your own story with no distractions.

So, again, here we have an app that succeeds because it is special needs professional-developed, rather than special needs-specific. My six-year-old, Mali (who could use more facility with suppressive rather than expressive language) thinks Milo: Interactive Storybook is fabulous because of its story, and because she likes playing with the interactive items on the screen and creating voiceovers. Whereas her brother Leo, who has limited expressive language, likes the app because it includes recorded voiceover, so he can "read" himself the story.

Note that neither Milo: Interactive Storybook nor That's Silly costs more than two dollars. And with both apps, kids of varying needs can learn, and have fun. Everybody wins.

This is how all apps should be.

----

Disclosure: I was given a promotional code for Milo: Interactive Storybook, but all opinions expressed in this space are my own. As always, I only write about the apps I think are worthwhile.

7.24.2011

I've always loved how Leo's iPad is a social magnet, attracting kids and parents to him by virtue of its much-trumpeted-about coolness. But apps that actually encourage people to interact with Leo (for whom autism means language and social interactions are challenging) -- as opposed to apps where let folks stand by and watch Leo kick iPad app ass -- those are rare.

Spot the Dot ($3.99) is an exception, and an app I recommend heartily. When Leo plays Spot the Dot, bystanders from ages 3 to 73 flock to our boy's side, talk with him, and cheer him on. It's delightful to watch, especially since Leo's been having a rough time lately, with fidgety behaviors that sometimes make folks in proximity uncomfortable.

In Spot the Dot, the user clicks through a series of screens in which a single elusive dot must be located, a different colored dot each time. Spotting the dot get trickier with each screen, as the visual environment becomes more complicated. It's harder than it sounds, especially on that last, white dot screen!

It's really fun to watch Leo use his excellent visual discrimination and pattern matching skills in varying environments. And he thinks the app is fun, too, as do all the folks who play the game with him, ask him if he can see the dot, ask if he thinks the dot is next to XX shape or XX color, and (even) beg him for a turn. These are the kind of interactions that, as an autism parent, I spend all day long trying to coordinate and cajole. But with Spot the Dot, they're happening spontaneously!

Spot the dot also exemplifies good, solid, simple, powerful app design. Literacy is not necessary -- users can click to any screen at any time by selecting that same-colored dot from the bar atop the screen. Every dot's screen has an intro with both text and voiceover direction that tells the user to "Spot the XX dot," while the "o" in the word "dot" is the dot color in question. Leo doesn't need help to use the app, which I always appreciate.

Highly, highly recommended.

Disclosure: Ruckus Media gave me a promo code for Spot the Dot, two months ago. But, as always, I only write about the apps I feel make a difference or are worthwhile for Leo and our family.

7.15.2011

Mali is an imp. There is no pussy-footing around the label. Today's example:

Our entire family minus already school-bound Leo drove down the hill this morning, to get the girls to their camp bus and Seymour to the CalTrain. On the way, Iz demanded the iPad Mali was playing with. Mali was cooly disobliging in her uniquely needly way, which resulted in shrieks from her easily triggered older sister.

Seymour and I tried to talk Iz down, but she became locked in a cycle. And then, the worst: Without saying a word, and while her parents were engaged with her sister, Mali unleashed a Songify (spoken words to dance tune) track she'd been recording on the iPad: of Iz's shrieking.

Iz went thermonuclear.

Seymour and I should have told Mali that what she did was wrong and unfair, but we were paralyzed with suppressed laughter while tears ran down both our cheeks, and had to wait until the car's interior mushroom cloud dissipated before we were able to tell our youngest that while what she did was indeed funny, it was also mean. Even Iz came around eventually, grudgingly, plottingly. I doubt her revenge will be as subtle as her sister's infraction.

7.14.2011

Leo has a hard time letting go of the people he cares about. And he's lost a lot of important people in the last few years, due to natural cycles (therapists), divorce (a distressing number of friends), and, yes, death. He keeps asking for them all. Years later. Often out of the blue. Because my son's elephantine memory and communication skills are often out of sync. But I think he's staring to understand the distinction between people who are really gone, and people we just don't see anymore.

Last night he announced, randomly, that "Pepere is not here. Pepere is coming tomorrow." (Pepere being my dad, who died in 2006.)

I responded, with a hitch in my voice, "No, baby, Pepere is gone. Pepere is not coming back."

Then Leo said, "Scott is all gone. Scott is NOT coming tomorrow." (Scott being one of the divorce casualties, as well as one of Leo's favorite people.)

I said, "No, Scott is not all gone. We might see Scott again."

Leo paused. "Pepere is all gone. We'll see Scott tomorrow."

Maybe, Sweetie. I hope so. I really miss Scott, too.

And I have to admit, Leo's considering that my dad may really be gone makes my heart twist, because as long as Leo didn't accept it, part of me didn't have to, either.

(I may sleep with a copy of Dale Carnegie, my dad's social skills bible, under my pillow tonight.)

Shannon Des Roches Rosa leads this in-depth workshop on how iPads can be a dynamic and cost-effective learning, therapeutic, and leisure tool for autistic children and adults. She will also discuss fundraising, research, accessories, and -- of course -- apps.

If you're considering an iPad for your loved one with autism, already have an iPad but aren't sure how best to maximize its potential, or just want to talk about all things iPads & autism, this is the workshop for you!

Come! Please! It'll be fun, and ever so educational. Plus you can geek out with a bunch of other iPad enthusiasts.
----

I spend yesterday morning at a local university, participating in an autism study. Part of the study was an interview about my experience as an autism parent -- including whether there were any benefits to my son Leo's autism diagnosis. "Absolutely," was my immediate reply, "We have become part of an amazing community -- full of people who support, understand, and trust each other unreservedly." But what happens when someone in our special needs parenting community abuses that trust? That's what many of us are worried about, after the Marissa's Bunny Foundation solicited donations from parents of kids with special needs for the chance to win iPads -- and those iPads never materialized.

For more information, Kristina Chew dubbed the situation "iPadgate" and covered it at Care2Causes. And Ellen's original post includes more than one update, plus extensive comments (160+ as of this writing) from parents attempting to analyze the matter, and a number of from Marissa's dad attempting to explain (if you're kind) or spin (if you're a skeptic) his position. I hope there's a way this can play out, other than wretchedly. And I hope none of this negativity affects Marissa herself, or interferes with her family's ability to support her.

----

But far the best iPad event of the day was making music with Leo, using the free app Songify. All you have to do is say something -- anything -- into the microphone while Songify is recording, and your words will instantly turn into a song! The app comes with a few modes, and you can purchase more (which we might) but Oh My Goodness does this app motivate Leo to speak loudly and at length! The only problem is Songify's instant-addiction factor. Perhaps one day I'll share my "Maps, Giant Squids, and Carnivorous Plants" track with the world, but for now please entertain your self with Leo's own creation, "Pizza Please," and enjoy the satisfaction of championing a cool tune before it lights up the Internet, and comes to the attention of the less-cool.

Any book with Leo in the title makes me happy not just because Leo is the very best name, but because our boy responds to books with his name in them. The app is also cute as, well, a bug, and has a story that any kid who has ever felt they weren't good enough will identify with:

Written by Eric Drachman and illustrated by James Muscarello, Leo the Lightning Bug captures emotions many children feel growing up. Leo is “the littlest lightning bug of all” who can’t seem to make his own light. Despite other lightning bugs teasing him, with determination, motherly support and a little luck, Leo eventually lights up in the night. With his newfound confidence, Leo now laughs at himself, plays with the other lightning bugs and enjoys a good night’s sleep.

While our Leo enjoys the app thanks to Oceanhouse Media's thoughtful use of consistent interface navigation -- it works just like every other one of their books -- his little sister Mali has become a big fan. She even found the app in the "to review" folder I'd hidden it in, and told me the entire story before I'd had a chance to read it myself, or with Leo!

Leo the Lightning Bug is a very sweet story for any kid, and (again, like other Oceanhouse Media titles) had the click-each-word-to-hear-it-read-aloud functionality that is especially useful to kids who, like my own Leo, are not yet fully literate, as it allows them to "read" books to themselves.

I hope your child enjoys this book, whatever their wonderful name may be.

Our Leo's other Favorite Leo books, for the record:

Leo's Tree More sweetness, as a boy named Leo and his tree grow up together.

Good Night, Leo A "Swashbuckling adventure" as another Leo says good night to each item in his pirate costume. Good modeling for step-by-step transitions!

7.10.2011

Leo is still in an intensely stimmy phase, as you can see in the video below (almost two minutes to put on a pair of Crocs and exit the car). The stimming alternates with bouts of intense crying that sometimes last for hours, and during which he's unable to tell us what's wrong. I spoke to his doctor, who thinks that Leo is indeed in withdrawal from Zoloft, despite our tapering off the medication gradually as directed. We just have to wait it out. Leo just has to wait it out.

I'd rather have guinea worms than see Leo in this state, and have to wait it out.

Even so, as I wrote in a guest post for Laura Shumaker's SF Gate column last week, we don't stay home. We just don't. Leo likes to be on the move. It's harder for him, clearly, with the debilitating stims and the mood swings (and occasional inopportune pit stops), but he also loves adventuring -- it's one of the few things that seems to make him happy in this state. So we don't stay home.

We don't stay home.

With Jennyalice and family at Muir Woods

We don't stay home.

At Bean Hollow's Pebble Beach, near Pescadero

We don't stay home.

At Pillar Point Harbor in Half Moon Bay, with Iz

Okay, well, sometimes we stay home.

Playing Poke Me! on the (new) iPad

Summer school (ESY) started last week, which seems to have helped out boy's mood somewhat, though they're seeing some of the same behaviors and volatility we are.

And it's not all worries and stims -- with Leo there are always heady jolts of wonderful. Three days ago, as we were practicing spelling and writing on his iPad, he sight read the word "cake" with no prompting, then tacked on "a" and "t" to the word "go" to spell goat. After I picked my jaw off the picnic table we were sitting at, I allowed myself to consider that the reading, it may really be happening. (Fingers crossed, toes too.)

Today, on the way home from a truly glorious day at the beach with one of our favorite families, he came up with a call-and-repeat, ever changing acapella jazz riff, and kept it going for most of the ride home, eventually pulling our entire family into his music. I wish I'd recorded it; it was astounding. You would have been astounded.

June was not a balanced month for our boy (or his mother, it must be told). I'm hoping for a reasonably settled July. And more of that acapella jazz riffing, because damn, that was cool.

7.06.2011

Leo's room is usually a flurry of worksheets -- for matching, sight reading, writing practice, basic math, dot-to-dot puzzles, all sorts of learning. I used to laminate the most frequently used sheets so as to reduce paper use, but now we're managing to do without many of those paper worksheets entirely -- we're porting the worksheets to Leo's iPad, cobbling a process together via the free apps DropBox, iBooks, and DrawFree.

Leo enjoys his iPad worksheets, whether he uses them with a stylus or in traditional touchscreen mode. The iPad format makes them easier for him to use than paper ones, and fun, too -- once again our boy is learning in ways no one anticipated.

Here's how I've been making Leo's reusable iPad worksheets:

Short version

Create worksheets in .doc or PDF format, on a computer

Upload them to the iPad using a shared DropBox folder

Save them on the iPad in an iBooks collection, so they're all in one place

Open worksheets in iBooks, then take a screenshot

Open that screenshot as a DrawFree background. Voila: fresh new worksheet.

Long version

1) Leo's program supervisor creates curriculum worksheets on her computer, in Word. (We use .doc or .pdf format files.)

2) Everyone on Leo's team installs DropBox (a Cloud storage service) on their desktops, and I install the DropBox app on Leo's iPad.

3) I create a Leo's Activities folder on my desktop, and formally invite everyone on Leo's team to access it via DropBox Sharing (which lets the Leo's Activities folder and any changes we make to it appear on everyone's desktops).

7.05.2011

I can't believe it's been a month since Mali & I laid waste to the Big Apple. And I really can't believe so much of Manhattan has turned into a shiny happy kid-friendly place since Seymour's and my early '90s Empire State residence. Where was all the urban shitty-gritty I'd planned on using to terrify my offspring into suburbanite complacency, I ask you? Look at our girl -- she's not recoiling in coddled horror; she's frolicking! With abandon! In Central Park! Which she chose over the giant piano and toy extravaganza of FAO Schwartz!

Mali now considers Manhattan an alternate universe wonderland. She's certainly never randomly happened upon a flea market featuring the perfect unicorn in California, or even in San Francisco. And any hopes I had about Manhattanites teaching our cheeky girl a social lesson or two were quickly dashed -- New Amsterdam's residents didn't just recognize their own moxie in our girl, they encouraged it. Lord.

San Francisco may have its share of playgrounds fabulous and new, but they don't hum and vibrate quite like the packed-to-the-gills play place in Union Square. Mali got as much peer play time as she could handle. Though I must say the parents I observed generally had bigger helicopters up their butts than West Coasters -- lighten up, folks. I realize some kids do require a personal playground coordinator (e.g., Mali's older brother), but not every single one!

I was also pleasantly surprised by the amount of that frolicking we fit in for so little dosh. There is so much free fun in Manhattan! Everywhere we wandered, up popped a street fair or flea market or another fabulous playground or the High Line (pictured) or the Staten Island Ferry or a dog show and festival or rocks to climb or fascinating shop windows to look in. It's also a good place to eat on the cheap -- we were quite content with bagel breakfasts, and slices for other meals. (Getting to and staying in NYC is of course not cheap at all -- but we stayed with friends and flew for free thanks to last summer's cancelled BlogHer NYC flight.)

Here are other things we liked:

Guerilla gardening with our friend Luis. Both times we helped him water and tend his gorgeous mid-boulevard garden strips (note cars around Mali -- they're waiting for a stoplight, not parked), neighborhood folks fell over themselves, wanting to thank him for beautifying their world. I think his would make a fantastic story for a local news magazine or TV show -- it embodies the fresh, new, but still scrappy Manhattan we got to know.

If you were given the opportunity to take your Eloise-like, Eloise-loving six year old to tea at The Plaza, I rawther think you would, yes? We loved loved loved The Plaza -- especially as we got to share that tea with our aforementioned beloved Luis and our also much-loved Carol.

Here is what is also free and fun: The Staten Island Ferry. Where you get really great views of the Statue of Liberty without having to actually go visit her or stand in line for more than ten minutes!

There was of course also the iPad Workshop I gave at the SoHo Gallery for Digital Art (which put TPGA and other iPad/autism pix on display for the event), and that workshop was a success. The participants were a good balance of parents, professionals, educators, and adults with autism, and I came away feeling like I'd both shared information with folks who could use it, and learned a lot myself -- an ideal mix. (Plus I got to meet Beth Arky and have a slice with her, so, more excellence.)

It's hard to capture everything we did in those action-packed three days -- meeting all of AMNH's dinosaurs and most of Manhattan's dogs, for instance -- but there's a big ol' Flickr photo set, if you're up for more serious fun. What really struck me is how family-friendly Manhattan is. That's not an adjective I ever imagined pairing with New York City's hub. I'd like to bring my family back. I'd like to bring Leo back. I'm sold. I get it.